UK Long COVID Service Evaluation and Forward Planning, 2023, Bath, Swindon and Wiltshire

YouTube - Long COVID Service Evaluation and Forward Planning: 28th September, 2023

https://www.youtube.com/watch?v=QDBMoI353v0

I attended this webinar last night my time. It's posted already on YouTube. 70 minutes in three main sections. This was hosted by a company providing a digital patient reported outcomes measures platform (DPROM).

The first was a good presentation on the statistics from a statistician/epidemiologist at the University of Leeds. The main message is that there is a high symptom and disability burden and that this is lasting.

Generally patients had been completely healthy prior to Covid. Fatigue was the main symptom, followed by cognitive, pain, sleep disturbance, PEM, anxiety/depression and palpitations. Cough and loss of smell and taste were the least reported ongoing symptoms.

There was an associated major reduction in quality of life, employment and financial status. This presentation's data will be formally reported in the next couple of months.

The second presentation was from two physiotherapists co-ordinating the LC service in Bath, Swindon and Wiltshire. There was a recognition that they are learning as they go with this "entirely new disease".

There were some major problems demonstrated, which probably relate to the aforementioned lasting disability statistics. Ie the disease and management model is poorly founded and the service is not helping, merely observing the natural recovery in some. There are unquestionable red flags. I don't know whether @PhysiosforME can help.

They have a virtual multi-disciplinary team with input from doctors: respiratory and cardiology consultants. They have also drafted in neurologists and FND specialists to "enhance their service offer".

They offer a personalised plan to "recover well" and "live well", focusing on "breathing well", "reconditioning", "living well with fatigue".

They have structured a 4-tiered rehab pathway. It is emphasised that this is predicated on the patient's "strong sense of self-efficacy" and "a willingness to change".

Tier 1 offers simple reassurance that "the symptoms are real" and "we believe them". The offer includes "talking therapies" and "singing and breathing".

Tier 4 is for the people with "multiple bio-psycho-social factors impacting engagement/outcome".

The third presentation was about plans for the app, with home use directly by patients.

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There were over 320 in the audience and throughout presentation 2 I observed multiple comments pushing back on the framing, eg referencing this week's Iwasaki Nature paper.

 

I see that youtube channel has very few followers, which is a good thing. Was gonna post a comment but that only boosts visibility of their shit.

 

Although to be fair to the host company, they aren't the problem. The symptom tracking and data gathering platform is probably technically pretty good. I expect that it could be helpful for patients. But the tech was being used by one of the LC services and it's that service's medical model that is highly problematic.

 

That's fair enough yeah. A lot of tech can cause misery when used by the wrong people.

 

worrying isn’t it along with the FND specialist being what I assume is the assigned specialism for the ME type after they’ve checked no lung issues etc ?

 

At a UK webinar this week, this slide was shown by a HCP from a NHS #LongCovid service to explain their tiered patient pathway - it’s based on patients’ “self-efficacy” and “willingness to change/engage”. I mean, WTF!!! #TreatLongCovid

 

This approach from the health system is exactly the one used for decades.

Virtually inevitable that we would be correct in predicting back in 2020, that anyone a victim of post acute infection from this pandemic would be subjected to the very same congealed gruel left at out on the counter at room temperature for day after and microwaved up then force fed to us.

If we gag and spew, if we sicken and die?

It’s never the administrators. Never the gruel. Always the lack of will to recover.

 

Is this just for this one health authority developed by or for them or is it for any authority in the NHS to have if they so desire?

I can’t read or see properly. Perhaps I don’t have sufficient will to supply my eye.

Anyway, on the first link it says at bottom of page patients rate at home treatment five stars.

This is interesting. But I can imagine how they could quite easily get a patient to say that is great for me, now I don’t have to come into the office to be insulted. I stay home with my kids and you can deliver insults to me online. Like everyone else does these days. Modern medicine being flexible and adaptive to the changing world. Bit slow off the mark but better late than never I guess.



EDIT: CORRECTION!
I summoned up my bravery and motivation and clicked on the link re- five star reviews, and these do not relate to the long COVID service, instead the acute COVID monitoring programme via Oximeters. A biomedical device. That as far as I know doesn’t measure willpower or willingness.

 

Will have a look at this - thank you for tagging us